Julie’s Story: Triple Negative Breast Cancer

When my husband first felt the lump in my breast in Feb. 2011, I dismissed it. (Yes, I could be the poster woman for the phrase: Save a Life. Grope your wife!). A normal mammogram a month made me confident it was a typical lump in my fibrocystic breasts. So, I decided to take the reasonable route and wait to see if anything changed. Perhaps the palpable lump was merely related to my monthly cycle and would wax and wane with hormonal changes.

After a month with no change, I made the appointment to see my midwife. At the appointment, the midwife agreed that this was definitely a new lump. She encouraged me to go to Dr. Morris and have it checked out. There was no detectable worry in my midwife’s voice. I wasn’t worried either.

It took 2 weeks to get into Dr. Morris. After a mammogram that showed nothing, but an ultrasound that revealed a lump, a biopsy was scheduled. During the biopsy, Dr. Morris joked with me about the procedure. My breasts were so fibrous that she practically had to put her foot on the core biopsy probe just to get it into my breast!! While she said nothing with certainty, she seemed to think it was probably benign.

The phone call came at 3:30 pm, fairly late in the day from what I had expected. Dr. Morris said who she was and that I had cancer. I couldn’t believe it. That was the last thing I expected! She said I should come in to discuss next steps. I remember feeling so surreal, like I was part of a Twilight Zone episode. I told family members and friends and shed many tears. What would happen next? Fear and numbness were inseparable.

After hearing the results and the recommended course of treatment, my fear started to subside and my fight started to kick in. My breast MRI and PET scan showed that there were no other tumors in my body, but given that my tumor was so close to my chest cavity and I was so small, the recommendation was a full mastectomy of my right breast. An additional complication was the type of breast cancer I had. Actually, I had 2 types of breast cancer. A small portion of my tumor was estrogen-progesterone positive, the most common type of breast cancer. The bigger portion, however, was triple-negative, a relatively new discovery that tends to strike younger, premenopausal women and is twice as likely to return as estrogen-progesterone positive breast cancer. Given this reality, I followed the recommendation for a double mastectomy as a prophylactic measure in preventing cancer from returning in my left breast.

I remember waking up from surgery and, though still drowsy, I asked my husband if they found cancer in my lymph nodes and he said “yes”. This moved my cancer into stage 2B. Despite having no traces of cancer in my body, chemotherapy was recommended to, hopefully, reduce the chance of return. Throughout my chemotherapy regimen I vigorously researched treatment for triple-negative breast cancer. I read articles online, read medical journal articles through Goshen College’s library database, scanned the web for any relevant clinical trials. Each weekly treatment I asked Dr. Suh if there was any new findings on my cancer. No was her consistent answer, but she was glad that I was so active in understanding treatment.

Radiation was also recommended, a recent change in this cancer treatment. Armed with knowledge of several large studies about breast radiation, my husband and I travelled to University of Michigan where I met with Dr. Pierce, one of the leading experts in breast radiation. She confirmed that radiation would be a good choice.

I weathered chemotherapy very well, only having mild nausea for 2 days. (And I was given Adriamycin, known as the red devil for good reason). At one point, I had to pause radiation for just a few days because I had intense burns on the side of my ribs. My time in treatment was truly a remarkable experience. The entire staff were wonderful: people were so compassionate, understanding, optimistic, encouraging, and competent. In many ways, it felt like a family to be in treatment for 9 months. I got to know the nurses and physicians on a personal level; they treated me as a special person, not just one more patient.

I remember the day after treatment ended. My next appointment was in a few weeks. I woke up and realized that I had nowhere to go today. I wouldn’t go in and talk to the nurses or Dr. Veghefi or my friend who accompanied me to each appointment. Now it was life as normal. Normal! What is normal?

Coming to terms with uncertainty changed my life. Few people expect to be cancer patients, especially with no history and no risk factors. Being a cancer survivor has molded me into a more compassionate, understanding woman who tries to never take for granted the blessings in life: a beautiful flower, a sunny day, robins chirping, children laughing, a warm house, good friends, and a humming bee hive (as my husband, a bee keeper, wanted me to add!), etc. As a Christian, my faith in God gives me hope despite circumstances, despite uncertainties in this life. We each have a choice of how we spend the minutes and days and years that we have on this earth. Will we focus on our aches and pains, pining after things that we wish we had or will we live each moment enriching others’ lives, spreading joy and in so doing, experiencing more joy than we can imagine? I for one want to do that. For that will be a legacy that lives on no matter what tomorrow brings.